Posted on August 1, 2016
On the afternoon after I had had my morning talk with palliative care, about giving up any active treatment, I had a visit from the liver team. They told me they had just had a big discussion with my oncologist and he wanted to start me on the cetuximab therapy the following week. Tubes and drains and no stents and shitty liver function results and yellow and the whole box and dice. I was GOBSMACKED. Could I find something again? Was it realistic to hold on when I had just decided to let go? Was it just too damned hard to hope again?
Also, I knew what it meant. It meant that he was willing to push boundaries, to give it a red hot shot, because there was no question that without it I was going to die, and soon, why not try?
I wish I could wind down the story from here, and say I went home and recovered from the stent and started treatment, but there is much more that it is important that I get out, mostly for the help it may give others in my situation, or even a little understanding.
At this point, I had been laying in bed for days on end with completely uncontrolled pain. There was the pain from the drain site, the blood clot underneath it, the growing met pushing against the liver capsule was causing me to have constant radiating pain from my waist level into my back, pain from just laying there in that rubber bed, pain, pain, pain. Pain relief was completely inadequate and I know for sure that madness that ensued with me wanting to give up treatment was caused in part by my nearly going insane over this.
One of the worst of the pains however was caused by the rigours bought on by the infection. When they called the MET call on me in the morning with a temperature of 39.9, they quibbled a bit about giving me panadol, as it is not the greatest thing for someone with a compromised liver. However, the doctor said it was much more important that I be given panadol to get the temp down quickly than die from septacemia, so they wrote it up and gave it to me straight away. Relief within about 15 minutes. Later that night, after Gaz had gone home and I was trying to settle for the night I started to become really cold again and told the nurse that I was sure my temperature was on its way up again. They called the intensive care nurses down to me – at that point they were having intensive care oversee my care without actually admitting me to the unit. The nurse said that my temp was again nearing 40 degrees and by this time my teeth were chattering, and he ordered that I was given panadol straight away. The nurse said that the doctors had not written up any panadol except for the morning dose and the nurse said that he had just seen the doctors in the corridor and they were to get them to write it up straight away. About 15 minutes I laid there and no one came near me, and then a nurse came in and started stripping the blankets off me and she put a cold washcloth on my head. Now, I know that it was not her fault, she was just trying to cool me off, and I am not proud of it, but this is when I almost completely lost my mind. I threw this washcloth across the room and told her to get me the papers to sign myself out, and I wasn’t staying another minute. I called some doctor a bastard and screamed at him to know why he was torturing me, why do you torture someone with such a short time to live, what was the point? I rang Gaz to come and get me and said I was signing myself out, screaming and sobbing – in 16 years he had never heard me like that I would hazard, it even eclipsed the night I told him to hide the knives. I don’t know what sort of land speed record he broke, but he came flying into the room about five minutes later and got into bed with me, wrapping his arms and legs around me to try and calm me (I did feel sorry for my other ward mates too, I am sure they thought that the mental health unit might have been a better place for me at this point) while I sobbed and howled and begged to be killed, and allowed to die. Finally some panadol was given and when it worked I was able to calm down a little. Gaz stayed in that bed with me until about 3am, and sure as eggs no one dared to tell him to go home.
In the morning I finally took charge of things, and said that I wanted the palliative care unit to take over my care while I was in the hospital. I have been part of the program for more than 2 years, and they know more about pain management than anyone. I have only really been involved through the district nurses though, who come out to home from time to time during times of acute pain and administer morphine, which has succeeded in keeping me from a hospital admission in the middle of the night about 5 or 6 times. This time they involved a palliative care doctor for the first time, and that was the start of the turnaround that I truly believe finds me still here today.